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New Diagnosis, Good Prognosis-Managing Fear

JoelyBeanMcD's picture
JoelyBeanMcD
Posts: 2
Joined: Apr 2021

I am 53 years old, was tardy on the colonoscopy, and I was diagnosed with Malignant neoplasm of hepatic flexure.  This is really just a scary way to name a big ole tumor in my colon that invaded the colon wall and 2 of 50 lymph nodes.  

Since my surgery, I feel fantastic (if a little sore from the incisions and the port insertion). My tumor was the size of my fist. I have suffered from iron deficiency, fatique and the inability to aborb key nutrients for the last 5 years or so. Clearly, the Stephen King Alien Parsite was causing problems for a very long time. Now that he's gone (I named him 'Corky' as a nod to the major bowel impaction that eventually led to the discovery) I feel like a new woman. 

And yet...I have cancer. 

My prognosis is very good. My margins were excellent. I need chemo (FOLFOX) to ensure that there are no microscopic buds. My treatment goal is curative. I start next week. But the 'C' word is terrifying, especially given that I have no family history of cancer of any type. 

I'm here for support and information. I need this because there is literally no one in my otherwise amazing support system that has ever experienced this, and so it's hard to find people to talk to about certain fears. 

I know that help is at hand here, but....

  • I'm hesitant to post what seems like postivie information for fear of making someone with a more dire circumstance feel bad
  • I'm hesitant to read posts because it creates a lot of fear for me. Yes my prognosis is good. Yes chemo is meant to be curative. Yes I could go years after this cancer-free....but what if that's not the case. What if it's just that it won't get me...this time. 

 

How do you all manage the barage of information? How do you go about connecting with people that are in circumstances closer to your own so that you can get (and offer) more applicable support and shared experiences? 

 

 

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

Sorry you are here, but welcome to the boards.  Good bunch of people.

Cancer brings a crazy amount of emotion.  Think about it - you have cancer.  You are doing well with it.  Yet there is some guilt attached to saying there is good news with what is happening with your situation due to the impact on others not doing as well.  I know I have had similar feelings.  And I am Stage IV with cancer everywhere (click on my bio link for full story.)

And it scares us all seeing what happens with other people.  Just remember eveyone is different and stats should generally be ignored.  I tell people that part of the way I get through this all is I have a bit of ignoring reality going on.  I know what is going on inside my body.  I see the scans.  I know the general way things are going to probably go (I had 12 out of 20 lymph nodes that were cancerous at my initial surgery, with a probable met in lung way back at the beginning. ).   But I try not to dwell on it. Can spiral down emotionally.  Not to say it does not happen, but try not to get caught up.

When I got my diagnosis, every one who had/has cancer became someone I could relate to.  I thought I had empathy before.  But with the diagnosis, I really "got" it.  So there is an inherent commonality with all cancer patients.  Then more so of a commonality with CRC due to having the same cancer.  But even then there is divergence.  Location of tumor, treatments, chemo before/after, etc.   So there is a kind of a funnel where at the top you can speak a someone with cancer, then it narrows down to more specifics of a case.  Mutations, whatever.  You can ask general or specific things here and there will be people with answers or suggestions.  There is a connection with every one, and subset connections seems to come about naturally through questions and answers.  

I try to read as many posts as I can.  Though on first read there are things where I may not have the general experience, there are bits and points where there may be common points of discussion/advice.  

SandiaBuddy's picture
SandiaBuddy
Posts: 1167
Joined: Apr 2017

I think that you will find that good news is always welcome on this site.  We celebrate the victories and empathize with the challenges.  I encourage you to post when things are going well--and to seek advice and consolation if things are not going well.

Regarding reading posts, my approach was to gain as much information as possible.  For example, you are facing chemotherapy, which for some is a walk in the park, but for many is an incredible challenge.  I gained many useful insights about what to expect on chemo that the doctors never mentioned.  The guidance from this board was extremely helpful to me. Reading posts provides both information and insight as to how others deal with issues.

Welcome to the board and best of luck to you in your upcoming chemo experience.

JoelyBeanMcD's picture
JoelyBeanMcD
Posts: 2
Joined: Apr 2021

Thank you so much for the insights

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

Welcome to the forum. 

You just recieved some excelletn advice from two wonderful, members of the forum. What can I add? Probably not much, but I will give it a whirl. 

Your first worry, was handled nicely by New & Sandia. It is true. It makes people incredibly happy to read the good reports. In the past, when the forum was really, really busy, we had an incredible amonut of much loved members pass away, and for some members of the forum, being here was just too hard.  Thus, a positive, happy to be alive post is so increibly helpful to the spirit of those who are up to their neck in treatments and surgeries. 

Now for the second query. I'm hesitant to read posts because it creates a lot of fear for me. Yes my prognosis is good. Yes chemo is meant to be curative. Yes I could go years after this cancer-free....but what if that's not the case. What if it's just that it won't get me...this time.

We totally understand that fear; we have all been there. We all handle it differenly.   Things are different as time goes along. At the beginning, I read to find out if what I was expereinceing during chemo, was normal. To find out how others deal with issues. It was all about how can this forum help me. And yes, I would get scared when I read posts of members passing, recurrences, horrific side effects. That is just a natural reaction. 

I quickly learned the chances or recurrance was high on my list, and thus, I was prepared when it happened.  I did learn that some of the side effects were horrendous, and yes that did happen. But at the end of the day, I was grateful that I knew what could happen.  I love the saying 'Hope for the best while preparing for the worse'.  And 'Knowledge is power'. 

There is an awful lot of good info, advice, hope, here on the forum. I hope you stick around. 

And just so you know, I am Stage IV and about to celebrate SEVEN years NED - No Evidence of Disease.   

Tru

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Please share your good news! It is so uplifting!

sgold88
Posts: 39
Joined: Oct 2020

The one main thing I took out of the "available information" when my wife got diagnosed at 39 yrs old with stage 3c Colon cancer (ended up spreading to her liver with two tiny spots that were removed, so should be stage 4, but they don't always restage you) is that all info in the internet vis-a-vis statistcs are just averages. My wife was diagnosed in Agust 2019, had 2 surgeries (one on colon, then another on liver, did 12 rounds of FOLFOX and finished last May. Clear scans since and we take it day by day going forward). For a 30% stage 3 or 4 survival rate, there are people in the 60s and 70s% survival odds and then some sadly at 0-5%. Your lifestyle, pre-existing conditions health regimen, age and specific nature of your disease all are factors. Unfortunately some people with stage 3 or 4 cancer may die from old age or something else, which distorts the survival rates. Take in all the information but with your relatively younger age, clean margins, curative intent of the treatment and adjunctive FOLFOX, you are, as I've mentioned to another person on this board, in a good spot amidst a crummy situation. I'm no oncologist but my message is that the statistics are very broad-based, and while the power of the mind has some effect on outcome (in my opinion), that same power of the mind will help you deal with this ordeal and it sounds like you are on a great path. Wishing you all the best and keep us updated. This board is great.

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